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Back from holiday

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We got back on Saturday from a wonderful holiday in the Eastern Cape. We really benefited from having a concentrated chunk of time together as a family... and we got to see lots of animals, which we loved!

We had been praying particularly that James would be able to see some cheetah as they are his favourite animal ... one evening just before sunset we saw another family who said they had seen some cheetah nearby - we raced off to where they had seen them, and drove along the road but couldn't see them at all! I thought I should turn around to drive back and try find them again, and just as I was doing a U-turn they popped up over the horizon - really special. We also got to go to a cheetah breeding farm where we were all able to stroke a tame cheetah and play with some lion cubs! (Pictures to follow...) Charis's chest cleared up fairly well, but she was fairly distressed by seeing a half-eaten buffalo in Addo ("I don't think it was very good for him...").

Yesterday James had his next bone marrow test (which he wasn't not looking forward to but went fine! results should be back next week some time) and amazingly his great-grandfather was in the same ward for a scheduled check-up at the same time, so we shared a room! Then he started school this morning, and also really enjoyed it - a great relief!


More details from Prof

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After yesterday's good news that James's bone marrow has been given the all clear, we had an appointment with the Prof who is in charge of James's treatment where we were able to hear more fully about the bone marrow test and analysis. We appreciated that both Prof and James's pediatrician seem to understand how difficult this is for parents emotionally!

He explained to us that although chemotherapy for children with ALL (the kind of leukemia James has), the main remaining problem is that even after years of treatment, some still relapse... this is because even after the treatment, some residual diseased cells can still remain, which can then multiply... a lot of research is currently going into trying to distinguish these cells before a relapse occurs, but this has not yet been successful.

So when they saw these strange cells in James's bone marrow they wanted to check as much as possible to see if there was any evidence that they could be diseased. They consulted with colleagues at Red Cross Hospital as well (they see a lot more paediatric cases), and concluded that the evidence all points towards them being normal cells. Importantly, they look different to the original leukemic cells that James had, and they show no signs of abnormality.

So the conclusion is that James is doing as well as he possibly could be under the circumstances. The risk of relapse remains, and the next expected high risk period is when he finishes his maintenance chemo in just over 18 months time... it was a bit disconcerting discussing this possibility again, but that's the reality!

We also discussed James's liver - his liver enzymes keep on fluctuating; while they aren't at a dangerous level, they're not going to increase his methotrexate dose unless they normalise more. This explains why James seems to not want food at some times but not others.

We are so grateful to God for sustaining us through the past few weeks, and we're trying to take a deep breath to gather our strength for the reality of the road ahead. Next week we're going away for a long weekend which we're really looking forward to!


Relief - James is still clear

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James the superhero

Today we heard from James's paediatrician that she got the final report on his bone marrow test - and he's totally clear! The cells that they saw on the previous test turn out under closer scrutiny to be Haematagones, apparently also known as Haemocytoblasts - basically they're immature cells, but they're not cancerous, so he's officially still 100% in remission! They're also not caused by a virus. What a relief it was to hear that news! We'll have our appointment with the Prof tomorrow where we'll be able to discover for more details, but it was nice not to have to wait till then!

We went out to the Spur afterwards to celebrate... thank you everyone who's been praying and writing and sending messages, it's been quite a crazy 3 weeks of waiting! We are feeling exhausted, but very very grateful!

PS - just to clarify, he does still need to carry on with his chemo as planned, but this now means everything is going according to plan, and he hasn't relapsed, which was the big worry.


Bone Marrow test yesterday

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Getting ready for bone marrow test...

James had his bone marrow test yesterday. He was incredible bouncy just before hand, but got knocked out pretty quickly by the anaesthetic!

It was really nice that there was another family sharing the room with us. Their daughter was having her last check-up bone marrow test five years after finishing her chemo for leukemia! Her parents told us that they also found "funny cells" in her bone marrow a few times during her treatment, but that they gave extra treatment and they went away (although it prolonged the treatment)... That was encouraging.

James's pediatrician explained a bit more: in the last test they found some blasts - abnormal cells - in his bone marrow. As I understand, they can't necessarily tell from that whether they're cancerous or not - but they regard them as a relapse if they reach a certain proportion (above 3%) of the bone marrow. They're wanting to investigate more to work out what they are, and this bone marrow biopsy will enable them to to a lot more detailed tests.

James's white blood cell counts and platelets were normal, which seems to indicate that this is probably not a full-blown relapse (they would expect them to be affected if it was).

We're going to see the Prof next week Thursday to hear what they find, but we'll probably hear before that if there's a serious problem ...


Extra Bone Marrow Test for James tomorrow

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Picture of James and Charis with Granny and Granddad and the boats he made

Last week, James had a bone marrow biopsy, which he has every three months. The hospital called us last Friday to say that they had seen something funny in his bone marrow, from the biopsy and they would like to do more tests. So, on Tuesday he had tests on him for TB of the Bone Marrow, CMV virus and Glandular Fever. The tests have all come back negative and so the doctors have said that they want to do a bigger bone marrow biopsy than usual on James to see what is going on with him. It is tomorrow morning at 8am. We would love some prayer - for peace and grace and healing. We have been trying not to react too much until we know for sure what is going on.

Some other news...

James loved school last term but coming back after the Easter break he has been incredibly anxious about it. It hasn't helped to have lots of public holidays and some time off for medical things which have made it very stop-start and not given him a chance to get used to it again. We've found this very emotional - his teacher has been fantastically helpful.

We have had my parents here this week and we have had a lovely time together. It has been such a blessing to us (Grandad did his famous making of the boats for the kids! Charis is very proud of her pink boat!!) We all felt so sad dropping them off at the airport this evening!


Liver results

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We went to see the gastro-enterologist today as planned to check out why James's liver enzyme levels were high. He said that the most likely reason is that some of the drugs he's on can gradually produce toxicity in the liver over protracted periods of time. This can eventually produce liver scarring etc which is not reversible, but if caught early enough, they can sometimes switch the drugs etc so that it doesn't have a permanent effect.


Bone Marrow results

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James had his Bone Marrow Biopsy (which happens routinely every 3 months) and Lumbar Puncture (and monthly intravenous chemo!) last week. The operation went smoothly, although he felt a lot more queasy than usual and ended up throwing up all over the car. David had to go straight off to conduct an interview after dropping us at home ... so it made it interesting for him with the state of the car!!!!) We got the results on Tuesday, telling us that he is still clear from leukemia! The Prof (his doctor in charge of his treatment) explained to us that we are exactly where you should be ... but you've got a long road left to walk! These were honest, but sobering words for us and reminded us of the continued need for prayer in many dimensions! We thank God that He is our strong foundation, never shifting or 'wobbled' by events or difficult happenings!


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